Experience with diet helping PMR?

[ZeusMom]

This is my first post. My husband has PMR and it has come back after two years. Trying prednisone again but tapering off is causing symptoms. Does anyone have experience with an alternative to prednisone and methotrexate such as anti inflammatory diet?

[piglette]

Sadly at the end of the day prednisone is the number one option. There are new possibilities being looked at, which hopefully might eventually be a replacement. Has your husband looked at a liquid alternative or an injected version? What are his symptoms? Diet can help of course too, but it is not a replacement for Prednisone.

[ZeusMom in reply to piglette]

He is on a low dose and when he goes from 6 to 5 mg he has breakthrough pain in his hips and shoulders. And he gets pretty down. The next step they plan is methotrexate which he doesn't like very much. We tried a strict diet of no carbs or dairy or grains or eggs last winter for two months and no prednisone. The PMR had returned and he wanted to avoid drugs. We gave up and he went on Prednisone. I have heard that a longer run at the ant-inflammatory diet would do the trick. Or maybe just giving up alcohol and sugar would help. Not sure where to go to get alternatives. Thanks for replying.

[piglette in reply to ZeusMom]

I think going from 6mg to 5mg is quite a step, for me anyway. Could he go to 5.5mg first? If he has problems now increase by 5mg for around a week and then dropping back to 6mg hopefully should help. A healthy diet, some gentle exercise and lots of rest should also help.

[PMRpro Ambassador]

Hi and welcome.

There are no alternatives to pred unless his insurance will cover Kevzara, a biologic which is now approved in the USA.

Honestly, diet will not cut it and you only get relief when you take enough pred, There is no cure, you can only manage the inflammation caused by an underlying autoimmune disorder until that burns out and goes into remission. Even the biologic is just a very expensive steroid sparer.

There has recently been a study published in the US showing methotrexate doesn't work and apparently rheumies are believing it at last!

rheumnow.com/news/icymi-say...

If he is OK at 6mg and not at 5mg - then 6mg is what he needs at present. Or he accepts he can live with the symptoms and try a dietary approach. Which will be hard work. I had PMR for 5 years before it was diagnosed and I was offered pred. After 16 years of pred it is still there. The evidence suggests that if you leave it unmanaged for a long time, the body learns the pain and the immune system also learns its misbehaviour and it is less and less likely to burn out. Despite the years on it, I regard pred as my friend. It gave me a life back after 5 very unpleasant years.

[ZeusMom in reply to PMRpro]

Thank you for sharing your thoughts. My husband's rhuematologist wants to cut back the prednisone. He doesn't seem to have side effects of the prednisone other than feeling great. At 66 we wonder about long-term effects of it. Thanks for the link to the article. I will try that if/when his dr recommends methotrexate. So much to learn.

I have friends who have drastically altered their diets and have cured themselves of autoimmune disorders. But I guess if pred is ok to take, it certainly gives a much better quality of life.

Thanks again and happy holidays. =-)

[PMRpro Ambassador in reply to ZeusMom]

I'm sure he does - but the PMR will be the judge and moderator of that! He will get to a lower dose of pred WHEN THE PMR ALLOWS it - when the underlying disease activity has slowed and less inflammation is being created on a daily basis.

I was 51 when PMR started, 56 when I was given pred. I've been on pred for 16 years and a lot of it at above 10mg/day. I have no real problems but pred gave me my life back and has allwed me to do many things I couldn't have without it. That 5 years without was pretty foul - I don't think I would still be here without it. Constant pain and disability really isn't fun.

You are unlikely to CURE an autoimmune disorder - the propensity for the immune system to go haywire remains even when the disorder goes into remission. You may be able to moderate the effects and symptoms with diet, cutting carbs drastically definitely helps many people but it isn't a cure. There was a supplement some years ago that was getting amazing results - until a Danish scientist got some and took a closer look at what was in it. It turned out there were undeclared corticosteroids in it - at a higher dose than usually used in PMR. No wonder it worked and patients felt great!! At least what we get is carefully monitored.